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I posted on here a few years ago. My dad (88-years-old) has been in a NH for the past 2 years. He is wheelchair/bed bound with swallowing issues. He had a dementia diagnosis about 10 years ago, but he's all there cognitively so IDK. Anyway, he had a fall from wheelchair about 10 days ago needing 12 stiches and then Wed he developed a 'sudden' bedsore at the small of his back and became catatonic. They sent him to the ER and has since been in ICU with 12 different diagnosis from sepsis, diabetic shock, aspiration pneumonia, UTI, kidney stone, plus more. I had a hospice consult yesterday that will start when he is discharged. He failed his swallow test so can someone please tell me what the heck is going to happen? I know no one knows but will the hospital discharge him in this condition? It seems so cruel I don't know what will happen when they take the IV out (hospice said no IVs) that is the only way he is getting real nutrition or hydration. My MIL hung on quite a while on hospice last year with no food/drink, but she was basically unconscious. My dad is still there to some degree. He keeps asking for water.


I am finishing a year of breast cancer treatment next week and I feel like I just can't do this. Thank you for letting me get this out!

Bluebell, you are understandably a mess. I want to say something to help you feel better but nothing is coming.

I'm just so sorry! You said you mil was on hospice, so I'm sure you understand that yes they remove and stop everything that is life saving, and it's all about comfort now. IV's are not comfortable. The meds that hospice gives you will make your dad comfortable.

It sounds like it's time to let your dad go with all the comfort he can get. I'm sure he is tired of being poked at. He just wants to rest now

Best of luck. I'm so sorry, please try to take care of yourself.
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Reply to Anxietynacy
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The IV is only prolonging the inevitable .
They can swab is mouth to keep it moist . He’s most likely asking for water because his mouth is dry .

I’m sorry , I understand it’s difficult , hospice will keep him calm and comfortable.

I agree it can be more difficult when they are awake asking for things than when they are in a coma .

Others would rather have LO awake and can talk with them .

Hopefully he will find peace soon .
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bluebell19 Jul 12, 2024
Oh I wish I could talk with him again. He can really only ask for basic things one word commands so to speak. That's been going on for a while. The dr just called and said she was going to hydrate him over the next 24 hours and then send him back to the home on hospice most likely tomorrow. So at least I have that answer. Thank you for reaching out, it means so much.
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Not being able to swallow is the first sign of the body shutting down. And if it is shutting down, IV feeding is not going to do anything. My Mom was 89 when she could no longer swallow. They suggested her getting a swallow test. At that point she had closed her eyes and would not get out of bed. So, I went with Hospice.

I would ask if that sore is a Kennedy ulcer. If so, thats a sign of the body dying too. The skin starts to break down. Did the Doctor/Nurse agree that Hospice is the best course at this time. I think it is.
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bluebell19 Jul 12, 2024
Yes, everyone is agreeing about hospice. I did ask the nurse if that was a Kennedy Ulcer and she didn't know what I was talking about. My MIL developed this about a week before her death so I think it is.
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I too am surprised a Nurse did not know what a Kennedy Ulcer was.
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Dad went back to the home on hospice Saturday and is off all meds. The hospice nurse did say it looked like a Kennedy ulcer (before I even asked). He is still taking in some pureed foods and thickened water (bites and sips) and is attempting to say a few words. Doesn't seem to be in pain so no morphine is being given, but it has been prescribed. I suppose this could take a while.
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Anxietynacy Jul 15, 2024
So sorry bluebells, 🙏😔 , keep us posted, we are always here.
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I am gobsmacked that the hospital was unaware of a Kennedy Ulcer!
If he is eating a bit, great. Use pureed foods if need be.
Don't be tempted to do a feeding tube. (If you were to do that you would have to drop Hospice as they will not do it, but they will accept someone on Hospice that already has a feeding tube.) As the body shuts down and your dad does not eat he is not going to feel hunger like you or I do. His body does not need the nutrients, it can not process the food either.
Just be there for dad.
Let him know that you will be alright.
The Hospice Nurse can let you know what signs to typically look for when he gets closer to End of Life or is "Actively Dying". the Hospice Team can request a trained Vigil Volunteer to be with dad, and you during that time. So even if you are not there a Volunteer will be there so he will not be alone.
🙏🙏
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Bluebell, (((hugs))). We're right here if you need us.
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Thank you all. Dad is holding his own at the nursing home with hospice involved. We went with a different company than we had last year for MIL and so far, so better. Not perfect - I don't like how the social worker was talking about the mechanics of his demise in front of him - even tho he has dementia diagnosis - he has always done well on cognition tests, it's the falling, immobility, speech and swallowing issues that he has been plagued with (PSP?). I know he's 'there', he loves to talk about how my hair is growing back from chemo and he was saying 'hair' to me and smiling the other day. He wants to 'watch' (put his tv ears in) CNN to hear about all the crappy news. He's still dad.
I'm just so surprised with all of the infections he had and no longer on insulin how he has stabilized to this point. He is still immobile - no longer able to use his hands or move his contracted legs, but he can still say a few words and eats a few bites/sips of thickened food, does not seem to be in pain.
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JoAnn29 Jul 17, 2024
Then u tell the SW to stop talking about his death. Hospice is there for Dad and family. If you don't like something they are doing, question it.
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Bluebell

I just wanted to say sorry about your dad, and about your cancer.

No judgement here! Take care of yourself.

🙏💓💐
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Bluebell,

Stay strong.

Your Dad sounds very tough. It is amazing he is still enjoying sips of food, water and tv.
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